Introduction
Autism was described in 1943 for the first time by an American pediatric psychologist L. Kanner. At that time peoplethought that these patients justdo not like talking. Nowadays it is known
that the Autism Spectrum Disorder (ASD) is characterized by a group of neurodevelopment disabilities with a core set of defining criteria that comprise impaired social interaction, communication, and restricted or repetitive behavioral stereotypes. (Tchaconaset al. 2013). Back in the time terms like Asperger, PDD-NOS (pervasive developmental disorder not specified) or classicautism were used to indicate the type of autism. Since the introduction of DSM-V (Diagnosticand Statistical Manual of Mental Disorders) eliminated the subtypes listed above by dissolving them into one diagnosis called ASD is for all those patients. (Kind et al.2016)
According to the Dutch Association for Autism there are approximately 1.9% of the Dutch population effected by ASD. The most systematic review indicate a prevalence, ranging from 1% to 1.5%, this applies to children and adults. This international prevalence is now higher than a century ago. The first prevalence study in 1966 gave an estimation of 0.04%. Recent studies showed that the current prevalence is higher mainly due to the increased knowledge and awareness about ASD and the fact that the current diagnostic criteria for ASD are wider/better than the criteria that were used decades ago.
ASD is a developmental disorder defined by an deficiency in social interaction and communication . Patients with ASD have a typical way of learning things, showing their emotions and reactions to certain types of sensations and stimuli (Waldman et al. 2008).
Typically, a person with autism is avoiding eye contact often wanting to be alone, having difficulties dealing with emotions of others and with their own emotions and have difficulties to adapt in an environment that is not known to them. ASD is a neurological disorder that can have a lot of effect on a person’s daily life. The etiology of autism is still unknown, despite the fact that much research has been done. The cause of ASD can lie within genetics, but the environment also plays a role (Waldman et al. 2008). Scientists found that ASD occurs about four times more in boys, the cause of which is a mutation in the X chromosome in boys (Waldman et al. 2008, Limeres-Posse et al. 2013, Kopycka-Kedzierawski et al. 2008, Rekha et al. 2012). Researcher Rekha et al. (2012) also showed that the age of the father can be a risk on getting an autistic child.
ASD begins before the age of three and last throughout a person’s life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18–24 months of age and then they stop gaining new skills, or they lose the skills they once had.[ ]
The children who are diagnosed with ASD do not respond to their name till 1 year of age; they do not point at any object or thing of interest they also avoid eye contact and want to be alone. These children find it difficult to understand others feelings and also to express their own feelings and thoughts. They exhibit delayed speech and language skills, and they have the habit of repeating word and sentences (Echolalia). ASD children also do not respond to questions properly or give unrelated answers. They have obsessive interests and they repetitively doing that particular habit like, flap their hands, rock their body, or spin in circles.[15-17]
Upbringing a child with ASD generates stressful conditions which in most cases are associated with adaptation to child’s routine, interference with education and healthcare systems, coordination of multidisciplinary caregivers, and limited availability of resources.[19]
Individuals with special needs, particularly those with mental and behavioral impairments,are affected regarding their oral health, with caries and periodontal disease being the most prevalent disorders[3].
Futhermore there are many comorbidities in autism patients, recent studies have shown that more than 70% of children with ASD had at least one comorbid disorder and 41% even two or more (Geurts et al. 2010). It is therefore important to correctly identify the primary and secondary diagnoses, for the daily life of a patient, the treatment programs and the evaluation of the outcomes of treatments.
Oral Manifestations of Children with Classic Autism Disorder
It includes bruxism, non-nutritive chewing, tongue thrusting, sounds of speech, ulcers in lips and gingiva because of self-injury, erosions in the teeth due to regurgitation, dental caries due to poor oral hygiene since home care measures is difficult in case of many children.
According to English literature, dental care for people with ASD is still in its infancy with or without an intellectual disability. Not much is known about patients with autism in dental care, as a result of which there is a suspicion that there is a dealings with the oral care for this target group. This can result in an inadequate quality of care.
Dental care should be viewed as integral part of comprehensive healthcare program coordinated by the medical home.[6] Based on the higher frequency of the regular medical screening of autistic children compared to scheduled dental visits, it can be presumed that an interdisciplinary approach with the child’s physician might help to overcome the anxiety of the dental appointment.[8] Lai and co-authors suggested an oral examination to be planned during primary care attendance to initiate the introduction of the child to dentistry.[11] Successful management of children with ASD requires preparation of the parents and child prior the dental visit, systematic desensitization of the operatory environment, case-by-case adaptation of conventional behavioral methods.[9]
Treatment of patients with a disability
More frequently it happens that patients with disabilities are inadequate treated because they need special care (McKinney et al. 2014). This care can not usually be given by dentists, because they have little experience and knowledge about patients with disabilities (Weil et al. 2010, Delli et al. 2013). Dentists have a particular difficulty treating patients with the following limitations: Down's syndrome, ADHD, patients with mental disability and anxiety patients. They find this especially difficult because of the problems that arise during communication (Weil et al. 2010).
Anxiety patients are always in a vicious circle. They try to avoid dental visits, which makes their problems worse, which leads to more intensive and traumatic treatments. This exacerbates and strengthens the anxiety that these patients have. This way, it goes further with the avoidance of future treatments. Anxiety patients belong to the group of patients where dentists experience difficulty in treatment. To facilitate this, it is first of all important to determine the patient's worries and fears, than to explore the reasons and then to get on with the patient to manage his fears so that the treatment can be performed successfully. (Armfield et al. 2013).
Research about the behavior and prevalence of caries in patients with ADHD showed that there was a higher caries prevalence, more behavioral problems and poor communication between dentist and child compared with the control group. The children with ADHD also had difficulty keeping focused on the treatment. These are good reasons for a dentist to have a strategic approach to support these children in interactions, because the situation can be very confusing for such a child (Blomqvist et al. 2006). Children with shortcomings like (ASD, Down syndrome, cerebral palsy, mental disability, deaf, blind) have generally a poor oral hygiene and a higher caries prevalence, however it depends on the child's limitations of how big these oral problems are (Gaçe et al. 2014).
ASS patients in dental practice
In the Netherlands there are about 190,000 people with ASD, of whom about 50% with an intellectual disability. Part of these patients also visit the dental practice, where they themselves, but also the dentist, can experience problems. Characteristic features in children with ASD that can influence the course of a dental treatment are:
– linguistic and social limitations
– presence of other diseases
– medicines used to treat behavior problems
– learning difficulties / mental disability
– increased sensory perceptions
– an inability to generalize previously learned behavior
In addition, there are also other risk factors that can lead to more difficult cooperation between dentist and patient, such as age, being able to read, being / not being house-trained, language use, type of treatment, non-verbal communication, minimal language use or echolalia, not being able to follow instructions in several steps, parents brushing the most / always the teeth of the child and getting special education. Younger children (<4 years) are also more difficult in the dental practice with cooperation than the older children. A large proportion of children with a different medical diagnosis besides autism are also more difficult in the cooperation. Autistic children are very difficult to cooperate in an emergency setting compared to operative care. It is also known that children with ASD with a higher IQ can follow better instructions in practice than the children with a lower IQ. Two or more of these "risk factors" was strongly associated with poor cooperation (Marshall et al. 2007).
The impact on oral health-related quality of life for individuals with ASD22 linked to increased frequency of unmet dental needs23 justifies research to map the oral health status of these individuals. These individuals showed a pooled prevalence of dental caries of around 60%. In all included studies, a significant number of children were diagnosed with caries lesions in both their primary and permanent dentition. The reported prevalence, however, had wide variation, showing values between 21%12 and
91.4%. when evaluating the occurrence of periodontal disease, individuals with ASD showed a pooled prevalence of 69.4%. These data came only from three studies that evaluated any type of alteration in periodontal tissues.(Silva et al, 2017)
A study by El Khatib et al. 2014 showed that the ASD patients had a poor oral hygiene, but between this group of patients and the healthy control group, there was no significant difference in the prevalence of caries. The majority of the studies shows that ASD patients have a poor oral hygiene. For example, an open bite, crowding, overjet and periodontal problems were more common in children with ASD (Delli et al. 2013, Fakroon et al. 2015, Limeres-Posse et al. 2013). Also a recent systematic review shows that children with autism have more often a poor oral hygiene, higher caries prevalence and more need for restorative or surgical treatments. This may be due to the medication that these patients use, which can cause xerostomia. The eating habits of ASD patients can also have a influence on oral health, patients with ASD tend to eat more sweets than non ASD patients. (Capozza et al. 2012, Chadha et al. 2012, El khatib et al. 2014, Gaçe et al. 2014, Jaber et al. 2011 , Loo et al. 2008, Rekha et al. 2012, Stein et al. 2012, Waldman et al. 2008). Moreover, esophageal reflux is more common in these patients, which is more likely to cause erosion and bruxism (Tesini et al. 2014). ASS patients have a deviation in their senses, which has a lot of influence on their behavior. For example, they react more violently to too much noise in the dental practice, find the taste of their toothpaste gross and have more pain than patients without ASD (Blomqvist et al. 2014, Fetner et al. 2014, Russel et al. 2005). Dentists are therefore more likely to use anesthesia, nitrous oxide or narcosis in patients with ASD (Blomqvist et al. 2014, Loo et al. 2008). Children with ASD not only have trouble with the collaboration in dental practice, but also at home this causes problems in following instructions for oral hygiene, due to limitations in communication skills, sensory and tactile responses and by repeating an certain behavior (Tesini et al. 2014).
In addition, it appears from recent studies that ASD patients often have a comorbid disorder, in more than 70% of children with ASD there is at least one comorbid disorder and in 41% even two or more. The three most common comorbid disorders in both children and adults with ASD are: depression, anxiety and ADHD.In children with ASD, the most frequently diagnosed comorbid disorder and depression in adults with ASD. Having comorbid disorders in addition to ASD may pose a greater risk of poorer oral hygiene with all its consequences (caries, gingivitis etc.) (Geurts et al. 2010). Lastly, dentists often see trauma around or in their mouth as a result of injuries caused by accidents or their own actions in ASD patients. When a patient with ASD reports pain in practice, where there is no caries, infection or any other type of problem, the dentist must be suspected of trauma caused by self-damaging behavior of the patient (Russel et al. 2005, Waldman et al. 2008).
Education about treatment of ASD patients
Research from the USA shows that most dentistry students do not find training on patients with certain shortcomings sufficient. They believe that the better the dental training prepares them for this specific care, the more trust they will have in the treatment of these patients (Krause et al. 2011). It appears from another study that the majority likes to treat a child or adult with ASD. The more they like it, the more they treat such patients and overcome problems related to communication and social interactions in these treatments. This study also showed that most practitioners agreed that their previous dental training did not adequately prepare them for treating ASD patients (Weil et al. 2010, Weil et al. 2011, Delli et al. 2013). There is a limited number of dentists who are prepared to treat a child with autism (Delli et al. 2013). Parents also indicate that it is difficult to find a dental practice that is prepared to treat their child with ASD because they need special care (Stein et al. 2012).
Treatment methods for ASD patients
In recent years the prevalence of ASD has increased, as a result of which dentists will more often have to deal with ASD patients. It is then essential for the dentist to be well prepared for the challenges that await him (Stein et al. 2012). ASD patients do not like changes, so it is useful to schedule the appointments in these patients every day the same day of the week, same time with the same dentist and the same staff and then also use the same treatment chair with also the waiting time and treatment time so shortly possible (Limeres-Posse et al. 2013). Patients with ASD have a limitation in making flexible predictions and creating expectations, which are necessary for a dental visit (Blomqvist et al. 2014). They are often anxious and insecure about what awaits them in such a treatment. It is then very useful if the therapist explains the patient beforehand step by step and makes clear what will happen. Tell-show-do is very common in children, practitioner tells first what will happen, let it be seen and then start working. This can prevent difficulties. It is therefore an idea to lead a child with ASD around once in the dental practice so that they get used to the environment. The treatments should preferably be kept as short as possible and everything done step by step, this could prevent confusion and irritation in these patients. Acquaintance with the child would be nice for him, where the dentist should talk at the same level as the child, which will be clearer to him.
Before the treatment, a questionnaire from the parents of the child with ASD could also help the therapist to make the treatment more successful. This questionnaire should then be about the child, his behavior and boundaries. This way the therapist knows better how to approach the child (Nelson et al. 2015). In addition, it will be useful if the therapist records extra information in the file of these patients, regarding, for example, the usual limits of the patient's attention and what difficulties have occurred in the past in the treatments. It is therefore customary to reserve some more time for these patients (Waldman et al. 2008).
Use of additional tools such as toy models, the child's favorite video clip, voice control and visual pedagogy can make the child more comfortable and also facilitate treatment. 'Voice control' ensures that the child does not misunderstand things. Visual pedagogy is already widely used as a means of communication at school and at home for individuals with autism, but it also appeared to be a useful tool in helping to improve oral hygiene in ASD patients. This involves using a series of photos and pictures with a structured method and technique of brushing teeth to clarify the oral hygiene instruction for ASD children. Before this study the parents of the children who participated in it found it difficult to maintain the oral hygiene of their children. After 12 months, the plaque was reduced in these children. After 18 months, most parents now found it easier to maintain the oral hygiene of their children (Delli et al. 2013, Pilebro et al. 2005). By using such aids, anesthesia, laughing gas and narcosis will no longer be necessary and the entire treatment can be successfully completed (Hernandez et al. 2011).
From various sides, including from scientific associations, it is argued to (re) structure the coherence in dental care for this group of patients by working in an 'evidence-based' manner. An effort must be made to provide adequate dental care for people with ASD with / without intellectual disability. An important condition for this is having insight into the patient-related, caregiver-related and organizational factors that are related to this. Think of being able to move in the way of thinking of a patient with ASD and to realize that there may be problems with information processing in such a patient. But also being educated in 'autism-friendly dentistry' by, for example, including attention in the basic curriculum and ensuring that 'autism-friendly dentistry' can be organized in the various locations (general dental practices, special dental practices, child dental practices etc.)
The research question in this study is aimed at finding out the existing knowledge and insights regarding oral care for people with ASD in general dental practice. There is already something known about anxiety and ADHD patients in dental practice.
In addition, the aim is to determine the themes for a questionnaire to be developed, which can be used to map out the current state of affairs with regard to the knowledge and experience of dentists in the Netherlands with the treatment of people with ASD. This will also address possible problems that dentists experience when treating patients with ASD.